http://www.thedailymigraine.com/blog/2016/9/29/hurtful-things-people-say
Migraines
Sick Writer

I find myself unable to concentrate this afternoon as I work on what I can only hope is my second to last draft. Everything is coming together nicely, but my health is taking an unhappy turn.
It only took six and a half months, two applications (the first of which they lost and didn’t tell me about until January!), and a plethora of phone calls to find out that my health insurance has finally been approved! The utterly daunting task of finding a primary care physician, a neurologist, and someone who can actually diagnose and treat whatever the hell I have is overwhelming.
Over the past few years I’ve come to wonder if I was properly diagnosed with Fibromyalgia. Sure, I match all the criteria, but is that what this truly is? There are so many other pain-related autoimmune disorders, and disorders that are pain-related and neurological. I wasn’t tested for the majority of them and it’s been a while since I was retested for Lyme Disease. In turn, I’ve decided to meet a new doctor and simply give him/her a list of my symptoms. I’d need to have blood work and tests done any way, so I’d rather start fresh and not even bring the word Fibromyalgia up to a new physician. I want someone to come back to me with a clear-cut diagnosis and a treatment plan. I don’t want to be jerked around. Nor do I want to be judged or treated like a drug addict for saying it. I haven’t been on prescription pain medication in five years. If I’d been addicted, it would have posed a serious problem. Instead, it was just an asshole doctor playing with my life. A doctor who lied to my face when I asked about his residency at a local hospital (it’s how I was referred to him, by a nurse that had worked with him). He’s the only doctor in the United States with that precise first, middle, and last name, so why lie about where you did your residency? It’s common knowledge with a little research. That wasn’t the only indication that something about him was off. Being dropped as a patient without warning was the icing on the cake after his in-office behavior.
My migraines have progressively gotten worse. I am currently on day ten of a migraine that has destroyed me. Each day I’m a little more hesitant to eat or drink, because anything can trigger my headaches now, and I simply don’t see any correlation between food, drink, and when I’ll get slammed with a headache. I can be okay for an hour or two, and the second I sit down to put the information into the migraine app, I get slammed with horrific head pain, nausea, etc. These are clear signs that I’m NOT okay and that I need to make sure a brain MRI is done soon. The last one I had was of my brain and spine. The brain scan is usually 35 minutes with and without contrast, but the spine takes longer and the position is extremely uncomfortable when you suffer from serious lower back pain. I ended up having a claustrophobic panic attack inside the machine. That had never happened to me before, so this time, I am going to make sure I’m armed with Valium, Xanax, or whatever a doctor can give me so I don’t have a meltdown in the middle of the test. I’m not usually claustrophobic at all, but I now know that MRI machines and snow storms cause me to go into pre-panic meltdowns at the mere thought. It’s the exact opposite of who I am, so it’s hard to explain why this is suddenly happening to me. I hope that whatever this is, it doesn’t not require surgery. I did some research and didn’t like what I found. 😦 This is precisely why I hate when people say “You could have this…” and I end up Googling it to educate myself on something I’ve never heard of before, only to convince myself of the “What Ifs”. A case of the “What Ifs” will only increase ones’ stress levels and anxiety, so why do people say shit like that”?! It’s one thing if I’m with someone and they’re displaying signs of a heart attack or stroke, in which case I am getting them an aspirin (for the former) and calling 911, regardless of which situation it may be. I don’t have to be anything more than concerned, and get them medical attention as quickly as possible.
The nicest thing a person can say when I’m suffering is “I’m concerned. Make an appointment and I will go with you.” If you’re going to say one thing and not mean it, then I’ll go whenever the fuck I go, but it won’t be on your terms.
I sit here this afternoon, really praying I don’t end up in the emergency room or at Urgent Care over a migraine. I’ll pretend that the stomach pain I’ve had on and off since Sunday is an abdominal migraine. I’ve never been diagnosed with them, but the symptoms come with a lot of my migraines these days, depending on the severity. You don’t have to be a rocket scientist to put two and two together. In fairness, what will either place really do for me? Not a whole lot. I’d be lucky to leave with an abortive, like Relpax, and a referral to a neurologist. That doesn’t help me, but would they do blood work on site? Yes.
I’ve already had to cancel my appointment with a Physician’s Assistant due to transportation issues. I don’t feel good about that, but it’s a huge scheduling conflict. Not every appointment in my life can be at the crack of dawn, especially when I am having severe issues falling asleep and staying that way. An early morning appointment means no sleep for me until I return home, and that’s if I can sleep at all. It then screws up my schedule until a week’s worth of Melatonin can correct the problem. So unless I’m sleeping well, I don’t commit to appointments that early because I cannot guarantee I’ll be able to make them. If I’m awake at six in the morning, chances are I’m in pain or didn’t get an ounce of sleep. I’ve got allergy medicine knocking me out most nights, and kind that is marked “non-drowsy”, so I’m not being stubborn, but I am owning my limitations.
Normal walked out the door a long time ago. I can’t expect anything to give me my life back. All I can do is muddle through the pain and pray that someone will eventually hand me the correct diagnosis.
Wishing everyone who celebrate a Happy Saint Patrick’s Day! Have a good weekend, one and all.
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

Migraines Tied To Increased Stroke Risk After Surgery
http://www.reuters.com/article/us-health-surgery-migraine-stroke-idUSKBN1522OF
I’m coming off a migraine that lasted over six days. I wasn’t even four hours out when another started back up. 😦 This has NOT been my week, but I hope I’ll be feeling a lot better tomorrow.
Out Of Sorts, And Then Some…

I’d like to thank the two people who reached out to me with messages of encouragement, respect, and kindness after my last post about how horrible I am feeling (My feelings have only worsened.). Steven & Tasha; your words genuinely helped me and, from the bottom of my heart, they meant the world to me. Thank you both SO much. I don’t even have the words for how touched I am.
As for the rest of the world; I’m not really feeling people too much these days. Granted, I am not a people person on a good day, but it would certainly be nice if some people were more aware of their words, behavior, and attitudes towards me. I’m sick of being told how I am speaking, how I sound, how I’m behaving, etc., because I’m well-aware of my intent when I’m being human. If you don’t know my tones, then you don’t know how I’m speaking, how I sound, or precisely how I am behaving. I’m not two, and I don’t require psycho-analysis by people who really ought to save that for those who need it. You’ll only piss me off, and at the moment, I’d shy away from that if at all possible.
I believe that life, and people, has/have highs and lows, but what do you do when you’re stuck on LOW and don’t know how to rise, and cannot find a reason why you should? I’m hardwired to get up each morning, feed Cat and Kitten, sometimes feed myself, but of late, I’m so physically, mentally, and emotionally drained that I don’t know how to do it any more. “It” being “anything”.
I adopted Cat and Kitten to help keep myself alive. Cat was a foster from a kill shelter, so I felt like by rescuing her, I was saving my life, along with hers. Win-win. Kitten is from a no-kill shelter; and I love to support no-kill shelters because they’re crucial to the survival of so many animal’s lives. Unlike Cat, who has divided love/loyalties (I’d like to say she has a big heart, but I’m genuinely not sure she even likes me most of the time.), Kitten is my faithful companion. Even when I move her off of my blanket at three in the morning so I can get comfortable or grab a few hours of sleep, she forgives me in minutes. Cat holds a grudge if I move her or rearrange her on the bed. In fact, as I am typing this Kitten is making little sounds in her sleep and giving me her belly, instinctively knowing that I am by her side. She is named in honor of my original Tortoiseshell. I’ve noticed over the past two years that she is basically a gift from her; a true companion sent to go through life with me. She’s not a “replacement cat”, she’s a piece of my original cat that I know in my heart was sent to me. But lately, caring for both of them each day has been physically and emotionally taxing.
I have reached out to organizations to try to get emergency help in order to feel better, but after applying for insurance MONTHS ago (which should be underlined ten times), I still haven’t been approved, nor have I received anything in writing from them, which they’ve repeatedly promised each time I’ve called. The answer I’ve gotten is “You’re in the system. You should hear from us in approximately 2-3 weeks by mail.”, before I’ve been hung up on! There’s a reason they call them Massholes, and it’s NOT because they’re all perfectly well-mannered (a small percentage, yes. The rest? Not so much.). I believe they had roughly 30-45 days to approve or deny me from day one, and that I’d then have a period of time to appeal, if denied, but at this moment I feel like I’m stuck at square one. In turn, after giving them one final call this coming week, I am reapplying. I’m utterly tired of the bullshit, because this is clearly a runaround, so I am going to fill out the application they deigned to send me (I have my original documents from last year, all I have to do is insert the same answers), attach copies proving that I’m a legal citizen with a bank account, and fax it instead of mailing it. That way, I’ve confirmed receipt of the documents and won’t feel jerked around, as I have clearly been for all these months. I’m sick of paying for medication out-of-pocket when that $20-$35 (it ranges based on the discounts I’m able to find) could feed me, or my cats. Overall, I’m sick of the struggle of trying to live, and failing miserably. I need to be able to see doctors without cringing over out-of-pocket costs that frankly, I can’t do.
Everyone’s definition of “failure” is different. Not being able to take care of what is most important in my life; that is true failure to me. Not being able to protect my loved ones and keep them safe; that is failure. Thankfully, I care, I am emotionally present, and I’m not a vile human-being, so on that front, I am NOT a failure. I’d hate to be a heartless, cruel individual who only cared about herself. Thankfully, I was raised by two wonderful women (My mother and Grandmother) and selfishness wasn’t a part of their make-up, so it isn’t a part of mine. I miss them both more than words can say. Everything feels like yesterday in terms of loss; at least for me.
This evening I merely want to survive the mind-numbing migraine that exploded on me this afternoon in the grocery store, to the point where I had to run to the ladies room to be sick. 😦 That has never happened to me in public before (except after having blood work done, and that was one time), but after that I quickly made my way to the register and went outside for some fresh air, despite the fact that it was indeed freezing and took over forty-five minutes before I could feel my ears again. The smells inside the store were making me violently ill and the noise wasn’t much better. This afternoon I indulged in silence, darkness, and a nap, but it only made the migraine that much worse. At the moment, I am praying that three ibuprofen will kick in, along with caffeinated tea I’ve been nursing since three o’clock this afternoon. Some people need coffee to feel human; I need strong Earl Grey with real sugar.
This week and this weekend, I am definitely out of sorts, but don’t worry… I’ll be back soon with something I’ve been dying to write, but have kept under wraps for years. No more. The Beast Is Back.
copyright © 2017 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
Personal Year In Review
I wish I had fabulous things to share here as I look back on 2016, the year itself as a complete “body of work”, as opposed to how I genuinely feel about it.
Here’s the unadulterated truth; I’m filled with mixed emotions, anger, pain, and the more I think about it, additional anger on top of the original anger, which is never a good sign. I make no apologies for my honesty. I’m many things in my imperfect human way, but dishonest isn’t on the list.
I take no issue with the company in my life, or lack thereof. I am a firm believer that we all go through hard times and that hard work, love, and prayer will get us through it. I take no issue with surviving (Life should be more than that though, right?) and having a few good days here and there (Though I am determined to not allow people to ruin my days when I’m feeling good and their moods aren’t meant for me. However, this is a process. It will not happen instantaneously.), but I do take issue with things outside my control.
I am a self-admitted control freak when it pertains to a lot of things in my life, and with other things, not so much. Overall, I’m tired of my best not being good enough, and having people remind me of my failures. Never look down upon someone unless you’re helping them up. Asking for help through tough times is not a grave sin. It’s honest, it’s real, and it’s admitting something vulnerable and scary is occurring that you cannot figure out how to face on your own. Why do we diminish that?!
I was raised to believe that as long as I do my best, it is always “good enough”, because it shows effort. And then I moved to another state where I know very few people, where “my best” is NEVER “good enough” because some unattainable level of perfection is expected at all times. It makes me feel like a bad Stepford Wife. 😦 I would not know what happiness was if a radioactive spider bit my ass. I haven’t known happiness in so long, it scares me. I feel emotions, yes, but happiness is almost never among them. How’s that for honest?
My brother has been through a torturous, evil kind of hell this year. I highly suspect that whatever was done to his heart set off a myriad of other health issues because I cannot recall a time when he wasn’t under the age of ten and on antibiotics as often as he’s been this year. He has been in and out of the hospital so many times that I’ve damn near had a multitude of nervous breakdowns every single time. I am currently waiting to hear back from a surgeon as he embarks on surgery number five in just slightly over a year; which is more surgery than he’s ever had in his entire life. It worries me on such a deep level, it’s difficult to convey.
I am immensely disheartened by how uncaring and unkind people are being towards him. At the beginning and end of each day, we only have so many family members in life, and as we’ve established, life is as short as it is long. My brother & I don’t have a lot of family, so we’ve had to rally around each other and be each other’s biggest support system through what has been, in essence, the gates of Hell. I may yell at him and get frustrated, I may say nasty things to him in the heat of the moment because he pushes my buttons, but ultimately, I’m not ignoring him or pretending he doesn’t exist in the hopes he’ll simply go away. I might not respond to a phone call or a text message when I’m sleeping, and sometimes I am guilty of ignoring him for a full twenty-four hours because I can’t handle the stress, but I do speak to my brother. I might not admit this to him, but he’s one of my best friends.
I say a painful goodbye to 2016, a year that has made me suffer in ways I can’t discuss; physically, mentally, and emotionally. I hope and pray that 2017 offers me more opportunities, better work, better pay, the same high-quality friendships I’ve maintained since day one (I’ve gotta say it; my friends are the BEST friends. They’re the first people to ask if I’m okay, to see through answers when I’m 100% NOT okay, and be as supportive as they can through crises. I would not have made it through parts of this year if it weren’t for the relationships in my life, both old and new, that have helped reinforce who I am as a person.), a real directional shift that leads me exactly where I need to be lead, and a year that allows me to achieve goals I have set for myself. The big goals, because at the moment, small goals aren’t cutting it.
I’d like to see some medical breakthroughs to help me better manage my pain and overall health. I was hit in the back with a shopping cart today at a local grocery store. This woman was on her cell phone and obviously thought she had enough room and/or didn’t even see me. I swear I am invisible to 99% of the “human race”. Initially my response was “Excuse YOU!”, but the lunatic just kept on walking, loudly debating stupidity on her phone. I did not feel it was worth pursuing in the moment, but now I am sorry I didn’t. I’m not sure if she did any real damage that wasn’t already there, but the level of pain I’m in is not something I want to take with me into the coming year, or any other year. I truly think CBD oil is in my future, as the “war on opiates” in this state is far too ridiculous to pursue with a doctor. I will, but I, like so many others, need a backup plan to help manage the pain in my life. No one should ever have to live like this.
Blessings to you all, as we say goodbye to 2016 and welcome in what will hopefully a bright New Year!
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
Puffy Eyes And The Changing Face Of Migraine
https://migraine.com/blog/puffy-eyes-and-the-changing-face/
It’s nice knowing that the utterly attractive “eyes are damn near swollen shut” thing many mornings and nights is NOT my cat allergy (Yes, I’m allergic to cats, but it won’t kill me. I sneeze and deal with far worse reactions to male cats, though. I did some research five or six years ago and discovered that people who are allergic are 99.9% allergic to male cats due to an enzyme in their saliva. However, they freak out so badly that they truly believe they’re allergic to all cats. Once people hear something, getting them to adjust to what they’ve heard isn’t easy.), but is highly likely part of my migraines. Welcome to the fun patrol! 😦



